People with dementia and their carers, at every stage of the illness and wherever they are, have the following rights.

Participation

People with dementia and their carers have the right to be provided with accessible information and the support they require in order to enable them to exercise their right to participate in decisions which affect them.

People with dementia and their carers have the right to live as independently as possible with access to recreational, leisure and cultural life in their community.

People with dementia and their carers have the right to full participation in care needs assessment, planning, deciding and arranging care, support and treatment, including advanced decision making.

People with dementia and their carers have the right to be assisted to participate in the formulation and implementation of policies that affect their well-being and the exercise of their human rights.

Accountability

People with dementia and their carers have the right to be able to enjoy human rights and fundamental freedoms in every part of their daily lives and wherever they are, including full respect for their dignity, beliefs, individual circumstances and privacy.

Public and private bodies, voluntary organisations and individuals responsible for the care and treatment of persons with dementia should be held accountable for the respect, protection and fulfilment of their human rights and adequate steps should be adopted to ensure this is the case.

Non-discrimination and equality

People with dementia and their carers have the right to be free from discrimination based on any grounds such as age, disability, gender, race, sexual orientation, religious beliefs, social or other status.

Empowerment

People with dementia have the right to have access to appropriate levels of care providing protection, rehabilitation and encouragement.

People with dementia have the right to help to attain and maintain maximum independence, physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life.

People with dementia and their carers have the right to access to opportunities for community education and lifelong learning.

People with dementia have the right to access to social and legal services to enhance their autonomy, protection and care.

People with dementia have the right to health and social care services provided by professionals and staff who have had appropriate training on dementia and human rights to ensure the highest quality of service.

Legality

People with dementia and their carers have the right to have the full range of human rights respected, protected and fulfilled. In addition to those explicitly contained in the Human Rights Act 1998, these include;

the right to live in dignity and security and be free of exploitation, violence and physical, mental or sexual abuse

economic, social and cultural rights including the right to an adequate standard of living including, social protection

the right to the highest attainable standard of physical and mental health.

People with dementia and their carers have the right to information, to participation in decision making and, where rights are not observed, the right to seek remedy through effective complaint and appeal procedures.

People with dementia have the right, regardless of diagnosis, to the same civil and legal rights as everyone else. Where someone lacks capacity to take a specific action or decision due to their mental disorder, anyone acting for them must have regard for the principles and provisions of the Adults with Incapacity (Scotland) Act 2000 Act. These principles are enshrined in Article 12 of the Convention on the Rights of Persons with Disabilities which sets out international standards in relation to legal capacity. In summary, any intervention on behalf of the person with dementia who lacks capacity must:

benefit the person

restrict the person’s freedom as little as possible whilst still achieving the desired benefit

take account of the person’s past and present wishes (with appropriate support to assist communication)

take account of the views of relevant others

encourage the person to use their existing abilities and to develop new skills.

Guided by PANEL show

The charter is guided by a human rights-based approach (known as the “PANEL” approach, endorsed by the United Nations).

It emphasises the rights of everyone to:

Participate in decisions which affect their human rights

Accountability of those responsible for the respect, protection and fulfilment of human rights

Non-discrimination and equality

Empowerment to know their rights and how to claim them

Legality in all decisions through an explicit link with human rights legal standards in all processes and outcome measurements

The Charter

This guide to the new Standards of Care for Dementia in Scotland is for people with dementia and their carers (family members, partners and friends). It explains what your rights are and the quality of care, support and treatment you or the person you care for should receive to stay well, safe and listened to.

Standards of Care for Dementia in Scotland

The Scottish Government have produced Standards of Care for Dementia in Scotland. The standards are based on the Scottish Parliament's Cross Party Group on Alzheimer's Charter of rights for people with dementia and their carers and also what people with dementia have said is important to them.

Contact

Alzheimer Scotland - Action on Dementia is a company limited by guarantee, registered in Scotland 149069. Registered Office: 22 Drumsheugh Gardens, Edinburgh EH3 7RN. It is recognised as a charity by the Office of the Scottish Charity Regulator, no. SC022315.